National policy in the UK surrounding the support of people with learning disabilities stresses the autonomy of people in receipt of support and the need for those who support them to maximise this. However, support workers also have a duty of care and can find these two policy objectives in conflict with each other. The researchers in this study set out to explore this potential conflict in relation to the support of people with Prader–Willi syndrome (PWS). Given the behaviours associated with PWS, the authors believed that this would clearly illustrate the potential tension between respect for autonomy and duty of care.

Using ethnographic methodology, the researchers carried out qualitative observations, semi-structured interviews and analysis of documents top look at the work of support workers in a residential group home.

They found that risk was central to care delivery at the home and that support workers often adhered to standardised risk management procedures. The provider organisation required support workers to promote independence. Many of the staff thought promoting the independence of service users was important. Some support workers deviated from standardised risk management procedures to allow service users a degree of independence as a way of managing the tensions between their differing duties

The authors conclude that there is clearly a tension between duty of care the recognition of autonomy at the level of service delivery in residential homes. Whilst the support workers in this study clearly attempted to manage this tension; the authors call for work at the level of provider organisations and national policy makers to help reconcile the duty of care with the duty to recognise service users’ autonomy.

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

I’m interested that there doesn’t seem to be any discussion of how the Mental Capacity Act should be used in this situation. (Though I guess there may be in the full article – perhaps someone who has access to the full text might comment?)
Alison GS

This is such an important and difficult area. It is great that someone is doing the research. Here in Cornwall there is recent history of getting it wrong at different times in different directions. A failure to promote the autonomy of in-patients, and a little later, respecting the autonomy of Stephen Hoskin where this may, in retrospect have been wrong because it therefore failed to protect him from hate crime. Alison is right, the laws that include both the Mental Capacity and the Mental Health Act set a framework, and the introduction of the MCA should be helpful However the tension that the article covers is implicit in both laws which contain both the idea of least restrictive practice supporting autonomy and the idea of protecting the person from harm. It can be paralysing for front-line care staff. Jane b

Unfortunately, we don’t have the rights to the full article when putting together the blog, but the impression I get from the abstract is that the authors explore in some detail the practical ways in which staff on the front-line manage this ongoing tension. As Jane points out, the balance between autonomy and duty of care requires constant revisiting in the context of the circumstances of each individual. The authors of the article call for further work by policy makers and service providers.

My own feeling is that the policy is probably clear enough (the legislative framework, the need for the least restrictive option etc.) but that the application of the policy calls for daily, sometimes hourly or minute by minute decisions by support staff and families.

Perhaps it is at this level that we need to focus most attention; at the level of local leadership and management support, to ensure that each of those small decisions add up eventually to the right balance between autonomy and duty of care. john

The article is of interest as I am struggling with these issues in a care situation. My 60 year old PW sister was in the hospital for a month with an acute attack of keotosis type 2 diabetes. We almost lost her. They said she had 20 percent kidney function and a week later that her kidney function was normal. While in the hospital her diet for diabetes was quite controlled and her blood sugar levels could be in a normal range.They had a sliding scale for the insulin in the hospital and sometimes she required little insulin. Now the dilemma arises in the nursing home were they wanted to give her autonomy. The front line staff in the dining room really are supporting the nursing home philosophy of free choice. With a PW challenged individual with type 2 Diabetes this is problematic. Her blood sugars are all out of wack. Her diet is the key (as demonstrated in the hospital) to keeping her diabetes in control. So we have a conflict of philosophy and medical therapy. Well we will see how we can strike a balance with the nursing home between autonomy and good medical dietary practice. Most of the staff have little understanding of how little to eat a PW person needs, and please don’t offer her raisin bread , ice cream , scalloped potatoes, pudding , biscuits, cookies, etc.